Endo refuses to treat me on nhs: Hi all, Just... - Thyroid UK

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Endo refuses to treat me on nhs

Caggie61 profile image
15 Replies

Hi all,

Just wondered if anyone could offer some advice please.

GP referred me to Endo last year (fourth one) but he refuses to treat me. He was informed that blood tests I'd obtained confirmed that I have high level of rt3 and below range rt3 ratio. Problem with T4 to T3 conversion.

I have a copy of the email my GP send and also of his reply, in which he states that for my condition;

'the only solution to abnormalities in T3 metabolism in women with hypothyroidism is a trial of T3. This can be attempted but we are now unable to prescribe the pharmacological version - Liothyronine due to prohibitive cost. She could access the use of Armour Thyroid which can be self-funded under private care - I would be happy to support her privately should she wish to pursue this and she can contact my secretary or you could refer her to me.'

I am very angry that although this Consultant confirms my ONLY course of action is T3, he won't see me for consultation unless it's on PRIVATE SELF-FUNDED basis only...........I'm FUMING!!!!!!

Any information please on my course of redress ....... what can I do?

Thanks

Carol x

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15 Replies
SlowDragon profile image
SlowDragonAdministrator

Which CCG area are you?

You can fight this

Caggie61 profile image
Caggie61 in reply toSlowDragon

My area is West Cheshire, thanks for your response SlowDragon.

I just don't understand how a medical professional can confirm the only way forward for me and then snatch it back unless I can pay privately. I don't have the money, I live on benefits, I also have fibromyalgia so my GPs know I need some sort of relief but nobody is willing to fight for me.

Do you think it would be worth taking to my MP?

C x

shaws profile image
shawsAdministrator in reply toCaggie61

Make an appointment with your local MP and complain.

If you also have fibromyalgia, I believe that T3 is helpful with this condition so if you were prescribed T3 it could help both conditions.

Caggie61 profile image
Caggie61 in reply toshaws

Thank you Shaws

C x

Caggie61 profile image
Caggie61 in reply toshaws

Hi Shaws,

Would you happen to know any available info on how T3 is considered beneficial for Fibromyalgia please? That sounds very interesting. I've had fibro for over 20 yrs, tried a plethora of meds to no avail. It totally debilitated me to the extent that I need a carer to help me wash and dress daily, and yet I still have to have WCAs for the DWP. Another waste of money from this government. If they could find a job I'm capable of doing on an ongoing basis, I'd gladly it.

Thx for your input

C x

SlowDragon profile image
SlowDragonAdministrator in reply toCaggie61

Yes, definitely go and SEE your MP (much more effective than writing)

see Improve Thyroid Treatment on Facebook for some letter ideas and facts, documents etc

Contact your local PALS too

westcheshireccg.nhs.uk/cont...

enquiries.wcheshireccg@nhs.net

Caggie61 profile image
Caggie61 in reply toSlowDragon

Thanks SlowDragon

C x

shaws profile image
shawsAdministrator in reply toCaggie61

Tell MP that, for quite a number of people, T3 is a life-giving hormone as it doesn't need to be converted like T4 has to but some don't convert to optimum T3 maybe because the GP only looks at TSH and T4.

They have withdrawn it instantly instead of at least some warning.

Caggie61 profile image
Caggie61 in reply toshaws

Ok will do thanks

C x

Clutter profile image
Clutter

Caggie61,

I'm not sure there is any redress if he has been instructed by the CCG or Health Authority not to prescribe Liothyronine (T3) due to cost. NDT isn't licensed for UK use so it isn't usually available on the NHS and most members using it have a private prescription or buy it online and self medicate.

You could, and should, complain to your MP that treatment you are being told you need is not available to you due to cost.

You can buy T3 without a prescription online and self medicate. 100 x 25mcg tablets is around £22.

Caggie61 profile image
Caggie61 in reply toClutter

Thx Clutter, I do now self medicate but it's expensive to do the blood tests. My GP wont monitor me since i started self medicating.

I feel it's a matter of principle that he says the only thing open to me for treatment but he won't help me.

I think I will contact my MP, I have a good working relationship with her PA, he's helped me before.

Tnx again

C x

Baobabs profile image
Baobabs in reply toClutter

Where is this T3 available from please and what is the make?

thanks

Clutter profile image
Clutter in reply toBaobabs

Baobabs,

There are a variety of makes available. If you want advice on where to buy T3 please Write a post asking for feedback to be sent to you via private messages. If you want advise on dosing include recent thyroid results and ranges, and current thyroid medication.

Baobabs profile image
Baobabs in reply toClutter

Not sure how to private message?

helvella profile image
helvellaAdministrator in reply toBaobabs

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